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Another Milestone in Our Journey

It was January 21, 2011, when Kate received her Alzheimer’s diagnosis. Late yesterday Kate had a routine appointment with her gerontologist. As I have done prior to other appointments, I posted an update to Kate’s chart via her doctor’s online portal. That way I am free to explain how Kate is doing without worrying about her feeling talked about or my taking over the visit. It worked especially well this time. The doctor took far less time exploring how she was getting along.

She began by asking questions of Kate. Because my report had mentioned a concern with her vision, she asked Kate to read a sign on the back of the door to the room. She was able to see the first word, “Our,” but not pronounce it. She never got to the rest of the words. The doctor asked about her daily routine. Kate hesitated and then mentioned something completely unrelated to the question and unintelligible to us. I had feared that they were going to go through the usual questions related to the President’s name, date, drawing a clock, etc. but was relieved that the doctor felt she had enough without going further. Kate also mentioned working in the yard, but, of course, that is something she hasn’t done in two or three years.

The doctor was accompanied by a man serving a residency with the practice. She asked Kate if it would be all right if she and I stepped out for a few minutes and let the resident collect some additional information. That was fine with Kate, and we left. While we were out of the room, the doctor gave me the prescription and application for a handicapped sticker for our car. That is something I had requested in my update. She also gave me a sheet with a detailed list of symptoms for the 7-Stage Model of the Progression of Alzheimer’s. She agreed with what I had already estimated, that Kate is at the end of Stage 6 and about to enter the final stage. I looked over the list when we got home. It seems rather clear that is correct. As I said in a previous post about two weeks ago, no one can provide a precise estimate of the length of any of the stages, but it was sobering to receive the information.

I thought back to the time of Kate’s diagnosis 8 ½ years ago. Kate and I both expected to hear that she had dementia. Hearing the doctor say it; however, had a great effect on both of us. That was also true for her current doctor’s confirmation of where she is now. I suspect most people who are around her would never guess that she is this far along. I am personally surprised that she is able to function as well as she does now that she is on the cusp of the final stage of the disease. I am able to see all the signs without any problem, but it seems to me that she couldn’t be at this stage just yet. I was also struck by the specific symptoms of each stage. There are quite a few for Stage 6, but very few for Stage 7. I am copying them below.

  • “Frequently lose the ability for recognizable speech although words or phrases may be uttered.” Just beginning for Kate.
  • “Need help with eating and toileting, and there is general urinary incontinence.” Just beginning for Kate.
  • “Lose the ability to walk without assistance, then the ability to sit without support, smile, and to hold up head; reflexes become abnormal, muscles grow rigid, and swallowing is impaired.”) Just beginning for Kate.

Like so many things, I find myself wishing I knew more precisely how much time we have, but it may be better that I don’t.

Looking back, I am satisfied with the way in which we have approached her diagnosis. Our goal was to make the most of whatever time we had. That goal has served us well. It is my intention to continue the same game plan. I realize that we will reach a point at which we are much more restricted in what we are able to do, but we won’t stop until I find that it is wise to do so. I remember that my dad took my mom with him wherever he went, except Kiwanis, until shortly before her death. I hope that Kate and I will be able to do the same.

This is one of those sad moments, but I want to emphasize that we are still experiencing happy moments and will do so for the foreseeable future. Apart from that, I have accumulated a treasure trove of memories before and since her diagnosis. I never imagined that we could enjoy life so much while living with Alzheimer’s. I am truly grateful.

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The Fading Allure of the iPad

I made the following entry seven years ago on August 18, 2012.

Thursday afternoon I bought Kate an iPad since her computer is in the shop again, and it seems that her computer is really a lifeline for her. When she is not working on a particular task like photo albums, she likes to play free cell. She also likes to get her email. I keep thinking that an iPad will be easier for her to use since she likes to use the computer in bed which can cause some problems with the connection to the power cord. 

Until I checked my old journal entries this morning, I hadn’t realized that Kate had been using her iPad for so long. At the time I got it, her primary “self-initiated” sources of pleasure were working in the yard (as much as six hours a day) and working on her computer. It’s been five or six years since she gave up the computer. It had become too difficult for her to operate. For a while the iPad was a mere adjunct to her yardwork. It’s been almost three years since she gave that up. That wasn’t because it was too hard. It related to the fact that she had pruned all the shrubs so severely that there was little for her to do. That was the major part of her yardwork although I have recently discovered that she must have been weeding as well. I say that because weeds had never been a big problem until the past two years. She obviously had been keeping them at bay.

When she stopped working in the yard, she was left with the iPad as her only source of amusement. The only thing she uses it for is to work jigsaw puzzles. She has used it morning, noon, and night. I haven’t kept track of the time, but I know that sometimes she must have spent as much as eight hours a day working puzzles.

I charge the iPad every day for her, but it is only in the past week or ten days that I have been especially attentive to the battery life left when I start the charge. My guess is that the average battery life has been somewhere between 25% and 45%. Sometimes it has been totally exhausted. Recently, the figures have been 89%, 88%, 45%, 91%, 75%, 45%, 92%, and 65%. That is a clear indication that she is using the iPad less now.

There are two primary reasons for the change. The first is that she is having increasing difficulty operating the program. The most common problem is that she gets into the store to buy more puzzles when she completes a puzzle. Just this morning, I taped a piece of paper over the upper right hand corner of the display. That is where the icon for the store appears. Like so many things, that could create another problem, but it should be one for me and not her. On other screens there is an “X” icon to exit that page and go back. I don’t believe she normally gets to one of those pages. If I can address that problem, it should make Kate’s life and mine a lot simpler.

There are other problems that I can’t prevent as easily. One of those is forgetting what to do with the scattered pieces. Thus far when this happens, I have been able take care of it by telling her just to put the pieces together to form a complete picture. Another involves her eyesight. She can’t see the lines of the frame against which the edge pieces should be placed. She seems to get there by getting near the line. When she is close enough, the piece will lock in place and can’t be moved. The other issue is that she is unable to associate similar colors or shapes to figure out where a given piece might go. She just seems to keep trying until she gets it right. Similarly, she can’t distinguish between the background color and design to identify places a puzzle should go. I have worked with her enough on this issue to conclude that is impossible for her to learn because of her poor vision.

Last night was particularly frustrating for both of us. I am surprised she persisted as long as she did. In fact, she only stopped working her puzzles because I suggested that she might be getting tired, and it was time to get ready for bed. Prior to that, she had worked on her iPad more than an hour. I was watching (trying to watch) the evening news. Throughout that time, I got up and down from my chair every few minutes to address a problem.

As you would expect, I am concerned about her giving up the iPad. That would create quite a void in her life. It would also add greater responsibility for me to keep her entertained. She does enjoy her family photo books, but they provide a different experience. They are not something that holds her attention as long as jigsaw puzzles. The puzzles also have the advantage of being more interactive. They require her to think more. While I can’t know for sure, I have an idea that she derives some sense of satisfaction from completing them. In addition, she likes the beauty of the puzzle pictures themselves.

One thing I know is that I won’t be able to control much of what happens. It will be helpful if my taping over the store icon works, but the other problems are more a function of the disease itself. I’ll just have to wait and see what happens.

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Morning Confusion Continues

I was just finishing up yesterday’s blog post when I heard Kate call my name. I started for the bedroom when I heard her call again. She didn’t smile when I entered the room, but she was relieved to see me. She was experiencing a milder anxiety attack than she had a couple of days ago. She didn’t appear to be as frightened, simply confused. It was another case of her memory’s being almost blank. She felt insecure and kept expressing that she felt better that I was with her. Despite her calling me by name, she didn’t remember either my name or our relationship. She clearly felt secure with me. She specifically commented that my tone of voice made her feel better and said she knew that I wouldn’t let anything happen to her.

I brought the “Big Sister” album to her. She recognized herself in the picture on the cover; however, I ran into a problem when I tried to go through the book with her. She was lying flat on the bed with her head on a pillow. It was awkward holding the book so that she could easily see the pictures. We decided to look at it later.

Then I started talking about her family. Although she was interested, it was too much information for her. As I had done the past two mornings, I played music for her. We turned our attention to it. The impact yesterday was greater than I have seen before. They were all choral pieces with beautiful harmony and soothing melodies. She was particularly moved by “Danny Boy,” “Deep River,” and “Swing Low Sweet Chariot.” Most of the time she held my hand or put her hand on my arm. A few times she asked me not to talk. She just wanted to listen to the music. At one point she shed a few tears. It was a very tender moment for both of us.

It was also a sad moment. She was still confused though uplifted by the music. She continues to have a sense that she is not all right. I think back to the times when I have heard people say, “At least she doesn’t know.” Kate may not know the name for it, but she knows she has a problem. How long will that last?

I stayed with her for over an hour. She was feeling better. I asked if she would like to go to the bathroom. She got up easily and took a shower. Most of the time, she didn’t know my name or our relationship, but she was quite comfortable with my helping her with toileting, showering, and dressing.

She was ready early enough for me to take her to Panera for a muffin before the sitter came at noon. Kate didn’t express any concern when Cindy arrived and I left for the Y. When I got home, they weren’t there. Kate hadn’t wanted any lunch until 3:00, so they had gone out for lunch. I am sure that had something to do with her having had a muffin not too long before Cindy arrived. I also believe Cindy is more passive with her than I would like. I think another sitter might have said, “I’m hungry. Let’s go get some lunch.” Kate might have responded more positively to that.

Kate may not have rested before they went to lunch because she was tired when they got back. I let her rest for an hour and a half before going to dinner. She didn’t sleep during that time. She just relaxed while listening to the music I played for her. She was ready for bed earlier than usual but was awake when I got in bed a couple of hours later.

During the night, she apparently had a dream. She was kicking her feet. I put my arm around her, and started to comfort her. She misinterpreted me and said, “No” in a very stern voice. Then she grabbed my hand and squeezed it very hard and held it for several minutes before she relaxed and dropped it. I don’t think she had been awake at all.

There is a lot going on in her brain right now. I just wish I could fully understand it.

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The Intensity of Kate’s Intuitive Abilities

I have often mentioned how much pleasure Kate and I receive because of her intuitive abilities. Recently, I indicated that they seem even more intense now than they used to be. Several things have happened in the past few days that reinforce my belief that they really are more intense now than before. All of them involve behaviors I have previously observed, but they were so much stronger than normal I wanted to pass them along. They are all experiences that involve her emotional response to visual stimuli.

Many of them involve her feelings about trees and flowering plants. She seems enraptured wherever she sees them. The plants on our patio and the trees on the neighbor’s property behind our house get most of her attention. She stops to look at them almost every time she passes through our family room. It also includes the flora she sees whenever we are in the car. This occurs even in areas that I wouldn’t say are especially beautiful, like some of the areas on either side of a highway. One of those instances happened at Chalupas Monday night. As we entered the restaurant, she saw two large pots with a grassy plant similar to liriope. They looked desperate for water. She immediately reacted to them and told the server who greeted us how beautiful they were. They have been in the same place for as long as I can remember, but this was the first time she has reacted to them.

The strength of her feelings is illustrated in a variety of other ways. She bought a ceramic cat many years ago that she used to keep in the bath off our our laundry room. It was something of a surprise to visitors who saw it at the base of the toilet. I moved it to the family room sometime in the past year or so. It now resides on the floor near the doorway from the family room to the kitchen. We pass by it every time we leave the house. It is only recently that she has taken special notice of it. Now she stops and says hello each time she walks by. A couple of weeks ago, she said we ought to give him a name. The next time she walked by him I told her his name is Pepper for Dr. Pepper since that is her favorite drink. She can’t remember the name, but she always likes it when I tell her.

She also takes greater interest in family photos each day. Two of those are of our daughter in her wedding gown that sit on a dresser in our bedroom. They catch her eye every morning. She doesn’t remember they are of our daughter, but she loves looking at her and her smile. The other pictures are grouped together as we leave the family room. Two of them are of our son when he was a child. Another is a picture of me when I was about twelve. There is one more of her father. It has become a ritual to stop and look at these photos each time we go out. She surprised me yesterday morning when she saw her father. She said, “I know who that is.” I said, “Who?” She said, “My father.” That was the first time I recall her recognizing this photo of him. On several occasions recently, she has picked up the photos of our son and asked if she could take them with us. I let her take them to the car. Once we are in the car, she usually gives them to me. I find a secure place to put them and return them to the house when we get home. The walk through our family room is turning out to be something that energizes her as we leave.

Night before last, she went to the bathroom before we went to dinner. She noticed a ceramic container with artificial flowers beside the sink. She had purchased it on our last trip to Fort Worth. Until last night, I don’t remember her saying anything about it. But she brought it to me. She said she loved it and asked if she could take it with us. I told her she could. It remained in the car until we got home when I brought it inside and put it back where she had found it. She not only received pleasure from seeing it but also being able to take it with her.

Another example occurred after lunch yesterday. As I turned into the driveway, she was puzzled about why we were here. I said, “This is our house. You’ll recognize it once we are inside.” I gave her a tour of the house similar to what I have done a couple of times in the past but much shorter. I pointed out a portrait of her grandfather and another of her mother, wedding photos of her and our daughter Jesse, and other artwork. She raved about everything she saw but never responded as though she had ever been here before.

When we circled around to the family room, she wanted to rest. She lay down on the sofa looking toward the backyard. She responded to that with enthusiasm. In addition, she looked around the room, and commented on how much she said she liked it. She said, “This is beautiful, and I haven’t even seen the rest of the house.” I told her I would be glad to show it to her. She said, “Not right now. Maybe tomorrow. I just want to rest.” And that is just what she did for the next three hours. She started working on her iPad but put it down after a few minutes. She was never asleep. I offered to go through family photo books, but she preferred to lie there. Like the day before, she was content. By the way, the battery on her iPad was at 81% of capacity this morning when I brought it to the kitchen to be charged. That makes three days in a row that the iPad hasn’t seen much use.

Experiences like these are not only important for her, but they are for me as well. It is sad that the tour of half the house did not jog her memory at all. On the other hand, she enjoyed the house tour. It’s an illustration of how each of us is still able to provide pleasure for the other. At this stage of her Alzheimer’s, that is priceless.

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Sleep, Rest, and Our Day

Each night I take Kate’s iPad to the kitchen where I charge it when I get up the next morning. The past two days I have noticed another sign of Kate’s changes. Her battery was already at 80% of its capacity. Over the past week or so I think it was in the 60-70% range. Normally, it would be at 30-40% or lower. That is a striking change and provides a measure of how much less she has used her iPad.

Her sleeping and rest have also been a little different. Yesterday was the second day in a row that she was up early. Both days we got to Panera around 10:00. That gave us time to relax there for an hour or more before lunch. I like being able to do that. It makes a nice daily routine and an easy lowkey way for Kate to begin her day.

Getting up earlier does have a downside. It means she hasn’t gotten as much rest or sleep as she usually does. The result is she spent most of the past two afternoons resting on the sofa in the family room. That’s what she was doing yesterday when I came home at 4:00 to relieve the sitter. In the past, Kate would have been ready to go out when I arrived. This time she wanted to continue resting. A half hour passed, and I asked if she would like for the two of us to look at one of her photo books. She didn’t. At first, I was concerned that she might be a little depressed. I talked with her a few minutes to get a sense of that. She wasn’t depressed. She was simply enjoying relaxing. I let her remain there until 5:30 when I suggested we go to dinner.

When we got home, I gave her a photo book to look at while I watched the news. She never opened it. She said she wanted to rest. I hesitated at first because it was 7:00. I thought she might have trouble going to sleep if she rested a little more, but I decided that it might be good for her to get a better night’s sleep. I suggested we go to the bedroom where she could rest in bed.

At 8:00, I got her night clothes for her and helped her prepare for the night. It was another two hours before I came to bed. I don’t know if she had been asleep at all. I do know she was awake when I got in bed. She was also in a good mood. She seemed very content. I am glad that she is happy, but I also see all her changes as a part of her overall decline and know there is a lot more to come.

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Our Sunday

Kate surprised me again yesterday when she woke up early. I assumed she wanted to go to the bathroom and then return to bed. The first part was right, but she wanted to get dressed and “get out of here.” I suspect I have mentioned this before in passing. It is not unusual for her to think she is someplace other than home when she wakes up. That much is pretty normal, but her mood about being elsewhere isn’t always the same. Sometimes she is just curious to know where she is and asks. Once in a while, like yesterday, she begins with a negative emotion about where she thinks she is. Nothing she has said or done has given me an idea of how this originates. I suspect it may be from a dream she has had. Another possibility is that she has been awake, looked around and tried to figure out where she is. When she can’t, she is either frightened or angry and wants to get out. As we walked to the bathroom, she said, “Why am I here?” I explained that this was our house, and we were in our bedroom. She gave me a look of mild surprise. She couldn’t quite believe it.

Although she wasn’t in a good mood, she seemed to relate to me quite naturally. I got her to the bathroom and dressed much more quickly than usual. That must have related to her desire to get out of the house. I was happy that I hadn’t had to wake her and that we would have time for a trip to Panera. Leaving our bedroom, I walked her through the hallway and showed her the family pictures we had looked at the day before. I don’t know if she realized she was at home, but she seemed like she did when we left the house. We spent an hour at Panera before leaving for lunch.

She was quite cheerful and sang a little with the music as we drove to the restaurant. Andriana’s opened at 11:30. We arrived at 11:35. There was only one other person there when we walked in the door. That proved to be a good thing since it gave us more time to talk with our server. It made for a nice social encounter. This is the server who has observed more of Kate’s symptoms than other servers. Not surprisingly, the poster of a mugshot of Frank Sinatra leads to some of it. Kate had asked me two or three times who he was. A moment after the last time, our server approached the table, Kate pointed to the poster and said, “Who is he?” When the server told her, Kate said, “That’s what Richard says.” It’s interesting how she remembered that but not Sinatra’s name until the server told her. This is not unusual. She often says, “I know I’ve asked you before, but who is he?” Sometimes she says, “I don’t know why I can’t remember his name. Who is he?”

We attended a local theater production of Matilda in the afternoon. Our last theater experience in the spring had not been the best, but I thought all the children in the cast would draw her interest. I was right. We had seen the show on Broadway four years ago with our daughter and son and three of their children. Everyone liked it, and the children in the show were of the caliber you would expect on Broadway. I wondered how our local talent would compare. I was glad to see that they did very well. That may have made more of a difference to me than to Kate. I think she would have enjoyed it as much even if they hadn’t been that good.

When planning activities like this, I place primary importance on how well I think Kate will enjoy the performance (movie, zoo, museum, social occasions), but there are also other things I need to consider. At this time of the year, the heat is especially important. Kate is sensitive to lots of things. Heat is at the top of the list. She complains a lot when we are outside during the day. I would definitely not think of going to the zoo in summer.

That also raises another issue – how far we have to walk from the car and back again. Walking is becoming more difficult for her, and she is very slow. Her slowness is relevant in other ways. Going up and down steps or in and out of entrances to buildings, I am sure others behind her can get a little impatient although I’ve never seen anyone react that way. Fortunately, there is a back door to the theater. I hadn’t realized it was available for anyone who needs it, but a volunteer at the door could see how slowly Kate was walking and invited us to enter. That saved a lot of steps for her. It turned out our seats were fifteen feet away from the door.

I had selected two seats next to the aisle. Kate needed my help getting into her seat. When she sat, she let out a loud noise. This is something that is becoming more common. It’s hard to describe, but it sounds a little like “Oh” as she releases air from lungs for a couple of seconds. A family of four came in shortly after we were seated. It took a while for me to get Kate out of her seat and explain where she should move so that the family could take their seats. She wanted something to drink, and we went to the lobby at intermission. When we got back to our seats, the family next to us had not returned. I suggested we stand in the aisle and wait for them. Kate kept wanting to take our seats. We sat down. That was just as difficult this time as before. A few minutes later, the family returned, and we had to get up again. This meant another challenge for Kate to get up and the sit down again. Increasingly, I am learning what so many other people already know – that lots of little things are more difficult if one has physical problems to deal with. As I look ahead, I need to pay more attention to accessibility. That is becoming just as important as the event or occasion itself.

The good news is that she liked Matilda. We also had a good evening at home after dinner. We went through Kate’s memory book together. I read everything to her. She can only get snatches of the text if she tries to read for herself. We also went through half of one of her photo books before she was tired. We went to the bedroom where I played a series of opera arias on YouTube to end the day. It is clear that we still enjoy ourselves, but it is equally clear that life is becoming more challenging for both of us.

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Another First

Although Kate has become very dependent on me, I have made a point of holding back as long as possible on a couple of the most personal aspects of her care, toileting and showering. As of yesterday morning, we broke the barrier with respect to her shower. This was not something I had planned. It came about quite naturally. For months I have walked her to the shower, turned it on, gotten her towel for her and pointed out the soap. Then I let her take over. When she got in yesterday, I noticed that she wasn’t using the soap. I opened the shower door and reminded her to use it. She didn’t understand what I meant. I pointed to it and told her to pick it up. She still didn’t understand what I was trying to tell her. That led me to show her. I put it in my hand and rubbed it on her body. To my surprise, she accepted that willingly, and I ended up bathing her. She didn’t protest at all. Then I used the shower wand to rinse her. She seemed to like that and would point to spots I had missed or that she wanted to be sprayed again. When we finished, I turned off the water and gave her a towel to dry off.

Like other changes, I don’t expect that this means that I will start bathing her all the time. It is a sign, however, that it may not be long before showering is another of the ADLs (activities of daily living) for which I play a more active role .

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Confusion and Mood Control

When I woke Kate yesterday, she was confused about me. She was very suspicious of me. This was unlike the day before when she didn’t recognize me as her husband from 5:00 until I went to bed last night. At least she seemed comfortable with me. That wasn’t true yesterday morning. It was somewhat awkward for her because she was completely dependent on me to get her to the bathroom and ready for the day.

I decided not to push her or try to explain anything. I just helped her get ready. When she was dressed, I told her I wanted to show her something. She followed me into the hallway off our bedroom where we have several pictures of her family. We stopped at the first one. I said, “This is your grandmother Franklin.” She smiled, and her eyes lit up.” I told her that was her father’s mother and there was something special about her that she would like to know. I said, “She was the first member of your family to go to TCU.” (a bigger smile) Then I told her we have a grandson who is the 60th member of her family to attend TCU, and his sister will join him in the fall. She was coming around.

The next picture is one of her mother that must have been taken in her late teens. It’s a beautiful photo and one of my favorites. I explained that she was her mother. It was no surprise that Kate was drawn to her smile and commented on how beautiful she was. We continued down the hallway and looked at pictures of her grandfather as well as her father. By that time her mood had changed dramatically. I don’t mean to suggest that she now understood that I was her husband, only that she was happy.

From that point we went into the family room where I showed her several other family pictures. As usual, she also admired the plants on the patio. Then I took her into the kitchen for her morning meds, and we left for lunch. I played music that I know she likes all the way to the restaurant.

When we returned home, I asked if she would like to work puzzles on her iPad or look at some of her family photo books. She noticed an album of her father’s family and picked it up. I asked if she would like me to help her with it. She said no. I went to the kitchen work on my computer. An hour later, she wanted to rest and spent the next two hours lying on the sofa. I brought my laptop into the room so that I could sit with her. I don’t think she ever went to sleep. After a while, I asked if we might look at family pictures together. She said she would but “later.” She said she just wanted to relax. I let her do that another half hour before going to dinner.

After dinner, she picked up a coloring book I bought for her about two weeks ago. She hadn’t shown any interest in it before. This time she opened it and spent at least forty-five minutes going through it. It is a big book – 200 pages. I was surprised she could spend that much time looking at it. She didn’t even take the crayons out of the box. When I suggested that we go back to the bedroom, she said she just wanted to finish the last few pages. I told her that would be fine. I was very curious as to what she was doing. There is nothing to read, only cartoon-like figures and shapes to color. When I looked over her shoulder, I saw that she was meticulously going through each page, touching each drawing or part of a figure on each page. She was pushing them the way she touches the screen of the iPad. Of course, nothing would happen, and she moved to the next one. I am still puzzled that she went through the entire book that way. She never appeared to be frustrated. Looking at her from across the room, it appeared that she was enjoying herself. It’s just one other thing that puzzles me.

She wanted to do something else once we went to the bedroom. She didn’t want to work on her iPad or look at photo books. She said she would like to read something. I gave her the three-ring binder that I call her “Memory Book.” It contains a variety of information about her and her family as well as our courtship and marriage. When I gave it to her, she didn’t know what to do with it. I explained that it was information about her life and that she could just read through it. She still didn’t understand. I read the initial information and then turned it over to her. She started touching selected words on the page just the way she had done with the coloring book earlier. When I explained that the book was different than her iPad, that touching the words would not take her to something else, she closed the book. I decided it was best not to push it.

She was already in bed. I told her I would put on some YouTube videos and pulled up a mix of videos of The Three Tenors, Pavarotti, Andrea Bocelli, and Andre Rieu. She listened to the music for over an hour while lying in bed. She was very happy, just another example of the power of music.

We experienced only one other hiccup before going to sleep. When I got into the bed, I frightened her. She apparently had forgotten I was there. When I spoke, she realized who it was and was relieved.

As you can tell, there is a lot going on in our lives right now. Apart from these moments, we had a good day. We enjoyed good moments together, and, except for frightening her, the day ended on a high note. What is encouraging is that even with her moments of confusion and feeling down, I still find it possible to find a way to bring her back. I hope that is something that will endure for a while longer.

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Adapting to Change

Kate has made many changes since her diagnosis past 8 ½ years ago. They are happening more rapidly now, and they are the kind of changes that alter our social activity. Some of them are more difficult for me to accept than others. One of those is forgetting who I am. The first time I was aware of this change was a year and a half ago. At that time, I wrote about it in a post on February 22, 2018. I am copying a portion of that below.

Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that. . . I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

I wasn’t ready for that. Since that time, I have often reported on conversations similar to the one above. It has been obvious that forgetting my name and that I am her husband has become more common than in early 2018; however, my present emotional response is no longer the same as it was then. That may sound surprising to some who have not gone through this experience, but caregivers are always adapting to the changes experienced by their loved ones. Forgetting a spouse’s name and relationship is just one more.

When I first notice new things that Kate is doing or not doing, it becomes a new reminder of what lies ahead. Her recent difficulty working jigsaw puzzles on the iPad is a good example. That’s a big one because that has been her primary activity for the past two or three years. Her increasing dependence on me is another. With the passage of time, however, I become more accustomed the changes. I keep adapting to a new reality.

I am aided by the knowledge that she needs me. We have given ourselves to each other for over fifty-six years, but we have never experienced anything comparable to the way in which Alzheimer’s has taken away her ability to survive on her own. That brings about an overwhelming drive to make her as happy, safe, and comfortable as I can. That emotion tends to override any sadness that accompanies her changes.

In addition, Kate and I still enjoy life and each other even in moments when she doesn’t remember me. Yesterday she had an extended time during which she thought I was a friend, not her husband. That would have been shocking two years ago but is becoming more natural for me now.

It started when I got home to relieve the sitter. She had been resting on the sofa in the family room. There was something about the way she greeted me that made me think that she didn’t realize that I was her husband. When we talked after Cindy left, it became clear that my suspicions were correct. She didn’t ask who I was; therefore, I didn’t tell her my name or our relationship. She recognized me a someone she knows and was very comfortable with me. We enjoyed ourselves during dinner, but she didn’t say anything that made me think that she of me as anything but a good friend.

When we got home, I played YouTube videos of Pavarotti and The Three Tenors as well as Jonas Kaufmann. We both enjoyed the music. It was a nice way to end the day. Yet it still appeared she didn’t know me as her husband. That was confirmed when I got into bed. She was still awake, and I moved close to her. We talked about having a nice day. She was very comfortable. I couldn’t resist testing her and made a not-so-subtle comment about our being married. She laughed. I said, “You don’t think we are married?” Very confidently, she said, “No.” Thus we went to sleep without her ever knowing or acknowledging that we are married. That is the longest period of time she has not recognized our relationship. I had my arm around her for a short time after we got in bed. I released my arm when I turned onto my back. Then she grasped my hand and gave it a squeeze. I felt happy just to know that she still thinks we have a special relationship. I would have been very unhappy with that two years ago.

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My Attempts to Control Kate’s Mood

Kate’s senses are in overdrive. I often mention this in connection with her appreciation of the beauty of trees and flowers and her enjoyment of music, but it occurs in less positive ways as well. At this late stage, she is sensitive to every situation she experiences. What happens determines how she feels. You might ask if that isn’t true for all of us. It is, but there is a difference. We don’t generally notice these emotional shifts among the people we are around. That’s because adults learn to act as though everything is all right even when it isn’t. Children and people with dementia don’t hide their feelings as well when things don’t go the way they like. Kate is certainly that way. Some people describe this as losing one’s “filter.”

I’m never sure how she will feel when I wake her in the morning. Most of the time she is in a good mood, but groggy. Other times she is confused. Sometimes she seems annoyed that I am there. There is no way I can know exactly what causes these differences. At times I feel like she has been awake and thinking about something that affects her mood though I don’t have any good basis for believing that.

Whatever the cause, I know that she awoke on her own yesterday, and she was happy. It was also earlier usual which enabled us to make a trip to Panera for her muffin. We were there almost an hour and a half before leaving for lunch. We relaxed at home after lunch. She rested on the sofa across from my chair in the family room. I played some music that we both enjoyed. An hour later, I took her to get her hair done.

It was following her hair appointment that her mood changed. She worked on her iPad while I worked on my laptop. I had to help her several times. In a little while, I noticed that she wasn’t working on her iPad. She was just sitting in her chair with her head propped against her hand. She looked very discouraged. I assumed she had run into further trouble working her puzzles and didn’t want to ask for my help again. I walked over to her and asked if I could help her. She shrugged.

I kneeled down beside the chair and quickly discovered she was confused. She didn’t know who I was. I suggested we look at one of her photo books and picked up the “Big Sister” album. She recognized the picture and knew that it was a picture of her and her brother. We turned to the first few pages. She recognized the first picture of her mother but not her father nor herself as a baby. She was not as immediately engaged by the photos as usual and asked, “Who are you?” I gave her my name and told her I was her husband. She didn’t believe me. I flipped over to the pages that include some of our wedding photos. She had trouble recognizing herself, her family, and me.

It was nearing time for us to get ready to leave for Broadway night at Casa Bella. I decided to take another approach. I walked her to the hallway where we have several pictures of her parents and grandparents. She enjoyed seeing the pictures, especially one of her mother that was probably taken when she was in her late teens. The emotion for her mother is always more intense than for other family members.

When we were ready to leave and just about to walk out the door, I said, “You look like you are still not too sure about me?” She indicated she wasn’t. I said, “That’s all right. I think you will feel more comfortable after a while.” She said, “I hope so.” Before pulling out of the garage, I started an album of Broadway show tunes that is a favorite of hers. We didn’t talk for a while. We just listened to the music. As “Some Enchanted Evening” played, she put her hand on my leg. That was a positive sign. Then “Shall We Dance?” started to play, I said, “Here is one of your favorites.” After each “Shall we dance” line she clapped her hands against her thighs. That was another sign of a change in her mood. I never asked if she knew me, but she was fine when we arrived at Casa Bella. Music had worked for us once again. Now the question was “How will the evening go?”

It was an evening of mixed experiences. As we walked along the side walk to the restaurant we met the couple we always sit with. They are always so kind to Kate. We greeted them and walked into the restaurant. We were off to a good start. Another couple was already seated at our table for eight. One of them was seated across from Kate, so I took the seat next to her. Very soon the conversation became difficult for Kate to follow. She asked people to explain or repeat several times but quickly withdrew. We had almost a full hour before the music began. Kate was uncomfortable. Several times she asked me, “Does this place have food?” I told her we had ordered, and it would be out soon. It wasn’t long before she whispered, “I want to get out of here.” I explained that the music would soon begin and that I thought she would enjoy it. I was right about that. The program featured the music of  Rodgers and Hammerstein, and the singers were outstanding. From a musical standpoint, the evening was a clear success. On the other hand, I am going to do some serious thinking about the future of these music nights. I don’t intend to make any immediate changes, but I may have to look into finding a table for two.

The evening ended well. Kate never showed any sign of being uncomfortable with me when we left. I think she was very glad that it was just the two of us.